Promouvoir la qualité de vie des personnes vivant avec la maladie de Parkinson et leur proche aidant par des interventions Web favorisant l'auto-efficacité de ces dyades

 

Line Beaudet

Centre hospitalier de l'Université de Montréal [CHUM]

 

Domaine : santé des populations

Programme Chercheurs-boursiers cliniciens - Junior 1

Concours 2018-2019

Partenaire :

Parkinson Québec

In Quebec, Parkinson's disease affects nearly 25 000 persons, as well as their caregivers and their families. This neurodegenerative disease evolves over a period of 5 to 20 years with major impact on the physical and the mental health of affected persons and caregivers. Parkinson's disease manifests itself particularly in persons over the age of 65. Of these, almost 80% live at home, and most are cared for by an elderly spouse. By 2030, with the aging population, the number of affected persons is expected to double, resulting in increased needs for specialized resources and care at home. However to date, few educational and support interventions are available for persons living with Parkinson's and caregivers, and even less web-based interventions. In Quebec, webinars and a virtual nursing intervention have been developed and evaluated to meet the evolving needs of both affected persons and caregivers.

The results of two studies show the relevance and the functionality of these tools, as well as, the participants' interest in these new information and support modalities, accessible everywhere, regardless the time of day. Participants recommended that these web-based interventions be implemented and become sustainable in community and health care settings in the province. A research program, based on three studies focusing on the implementation process of Web interventions, is proposed to enlighten this complex project. These studies are important because they will contribute to knowledge development on the implementation process and its evolution over time, to better understand the decisions of affected persons living with Parkinson's, caregivers and health professionals regarding the adoption of these innovations or not in their everyday life, and finally to identify the main determinants participating in sustainability and their consequences.